CARER RECOGNITION

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Comment by Geoffrey Michael Nicholls on February 16, 2012 at 17:37

It all seems to have gone very quiet. Here are some of my latest thoughts

The Case for Dementia Sufferers and their Carers

In Cornwall there are estimated to be 9300 people with Dementia. The number is derived from those known to Social Care and the county’s demographics. Cornwall has identified 48% of sufferers in the county, which is better than most authorities.

There is good support in the form of literature and advice for those in the early stages of Dementia. This helps carers to understand the condition and plan for the future. It is those in the advanced stages and their carers that are the cause of most concern.

If we take 10% of the 9300 as falling into the advanced category we arrive at a figure of 930.  I would describe advanced category as those sufferers who cannot be left without supervision for more than a very short period of time, half an hour or less.

Talking to carers and those who help in the memory cafes there appears to be two possibilities open to them.

To continue to care fulltime without any formal help

To make the heartbreaking decision that residential care is the only solution

This is a stark choice with which to confront people.

Informal help may be available, neighbours doing shopping, helping with gardening, or providing transport on occasions.  In some areas there may more formal voluntary organisations that can help, but this sort of support is very sporadic and only available in a few areas.

The picture that emerges is a group of people who are on duty 24 hours a day without any certainty of when they will have any time to themselves. 

In normal circumstances most people would expect to have one day a week when they are not working.  They might also expect to have two weeks holiday a year.  This of course is not possible, but they should be getting some minimum support.  I would suggest as an absolute minimum one day of respite care every quarter and a sitting service of three hours per week.

Clearly this would increase the budget substantially.  The government will say that the funds are not available, but funds are always available for the government’s priorities.  Money for weekly refuse collection, the doubling of the budget for the opening ceremony of the Olympic Games, money to subsidise childcare for working wives has been suggested.  The argument that the country cannot afford to provide an adequate service is nonsense.  Despite the Prime Minister's assertion that the vulnerable will be protected, it is clear that those who shout most receive most. Further arguments are based on predictions of future need.  The predictions that the government are using take current trends and project those trends in a straight line for 30 or 40 years.  There is no reason to believe that life expectancy will keep on rising at the current rate for the next 40 years, nor that the increase in the incidence of dementia will be continue to rise.  In fact, there are already signs that the progress of dementia will be slowed or indeed stopped in the next decade..  If we think of the country in the early 1800s we would probably predict that in the following 50 years there would have been a substantial reduction in the population due to contagious diseases.  In fact, due to changes in hygiene and vaccination the population flourished. 

Anyone who has had to do predictions for business know that in the short term, the predictions can be quite accurate say for 5 years, 5 to 10 years can be of some guide, but in my experience predictions over 10 years are at best tentative suggestions of what might, possibly happen.

On the enclosed spreadsheet are the costs of providing the minimum service that I suggested for Cornwall.  I should add that I have not prepared this paper as a criticism of Cornwall Council or the NHS; it is a criticism of the government's funding and understanding of the needs of some of the most vulnerable people in our society.  I use Cornwall to illustrate the problem but from my contacts, it would appear that the same situation appertains in much of the country. I would just add that nationally social care has not put its case forward with the vigour of some other services.

As the enclosed spreadsheet shows the cost would be just over £2m a year.  It is unlikely that this figure would be reached since some carers would not take the opportunity of respite care and then there would be the receipts from means tested charges. If by supporting the carers they can carry on caring for 2 or 3 months longer this saving can be set against the £2m. Though why we charge for respite when carers are saving the state so much expense does not appear reasonable. However that is a discussion for the future and not for now.

Mike Nicholls February 2012

Comment by Geoffrey Michael Nicholls on September 9, 2010 at 20:47

What is concerning me at the moment is the criteria applied in order to be eligible for assisstance from social care.

A wife aged 73, with high blood pressure has been caring for her husband, who was diagnosed with dementia 3 years ago. The dementia is progressing such that the husband needs 24/7 care. Whilst neighbours provide help with some domestic tasks the caring role falls solely on the wife.

In the first scenario the wife falls and breaks her hip. This I think we would all agree is an instance of Critical.

In the second scenario the wife asks for help, since she feels she can no longer cope. The condition of her husband is putting pressure on her health and her blood pressure is harder to control. I believe this falls into the category of Substantial.
A package providing some home and respite care could delay the provision of residential care for a significant period of time. At present this type of support does not appear to be available, as one carer said to me “Respite is as scarce as hen’s teeth.”

The Dept. Of Health Paper
“Impact Assessment of the revision of the Fair Access to Care Services (FACS) guidance”

The paper makes much of early intervention, yet doesn’t suggest how this should be funded, but it is right in principle.
Clearly demand has escalated and funding has in no way kept step, but rather than accepting DOH advice social care should be challenging the DOH. They hide behind a smoke screen of “Choice”.

But what is happening is that a very small number of people have choice and the majority have no choice since they are not "eligible"

I believe that the case for social care is never heard. The only discussion is around how social care can be funded in the future. The commission is due to report back in around 12 months, but how long will it be before the the new funding scheme is in place? Two,two and a half years. The NHS budget has been ring fenced, but not social care and yet the integration of health and social care is
recognised.
There are pressures on social care. Whenever the financial climate is bad the demand for social care services rises. There are increasing demand on social care. People with learning disability are living mch longer, more premature babies are being born, who will need lifetime care and of course we have the ever growing number of elderly people with dementia.

Finally what sort of country are we when we fail to support elderly people caring for their partner 24/7?

Comment by Gemma Roulston on September 9, 2010 at 18:21

I do not think that the powers that be fully realise the problems that there changes to DLA are going to make not only to the disabled, but also to us carers.
One of the criteria for getting Carers' Allowance, is that you have to be looking after someone who is gettting DLA (middle rate care). However, under what was proposed in the budget was that a disabled person would be medically assessed (er it is paid whether you work or not) and it to help socially -and if ATOS - or whoever deems that you can work - then you will have DLA taken off you. If they do that, then carers will have carers taken off them.

I suppose Nick and David only feel warmly towards carers' of people on attendance allowance, as a the carer will not get Carers' allowance, b - they do not have to assess them for work suitability.

Comment by Gemma Roulston on September 9, 2010 at 18:15

I thought that I had kept people here up to date with news about Robert Tusler, who was one of the members here.
Robert went into hospital in June time, and then was diagnosed with renal cancer and secondaries. He died in August. His wife, who has MS, is being cared for by one of their sons'. Robert was rather good at getting things across to people - and not always in a PC kind of way. He will be missed by everyone who knew him, and certainly at Action for carers Surrey - of which we were both trustees.

Comment by DAVE WARREN on May 13, 2010 at 18:59

I understand your situation Iain. My health has suffered as a result of trying to be a carer and work full time. You really have to fight hard to get any help.

Have you been in contact with Carers UK?

Comment by DAVE WARREN on May 9, 2010 at 18:55

Oh dear i am sorry to hear that Daniel.

I have been trying to get the issue of lack of support for carers into the local
media with some success.

Like you i really fear a Tory government.

Comment by DAVE WARREN on May 9, 2010 at 18:04

Daniel

I symphathise with that situation.

I have been a full time carer for a while now and the help you get is pitiful.

I had some respite care arranged for this Monday coming and they tried to
cancel it on Friday evening.

Could go on. Has your Mum done a carers assessment, i have and it led to
some financial help.

Comment by DAVE WARREN on April 27, 2010 at 17:41

Hi Robert

Here in Reading they didn't tell me about carers assessments i found out about them from Carers UK.

When i raised the issue with Social Services they said it was more form filling
and did i want to do it.

I have now done the assessment and have got some one off financial support as a result.

Would be interested in finding out how you get on.

Dave

Comment by Robert Tusler on April 26, 2010 at 22:48

I have arranged to have a Carers Assessment on Wednesday, so will report here on the process and results if necessary. It is somewhat surprising that Social Services here in Surrey cannot understand why most carers seem to be reluctant to have a carers assessment. They cannot get their heads around the deep distrust in the client community of Social Services, mostly well earned over years of experience!

Comment by DAVE WARREN on April 26, 2010 at 20:31

I am a carer and have had very little support in my role.

Carers save the country millions and there are going to be
more of us with an ageing population.

Hoping to discuss some of these issues in future.

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